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  1. So I found another forum called Honeycomb and came across a thread about gene editing for herpes. Has anyone heard of this? I googled it and found a company called CRISPR or something. I really hope this is something that can be done in the future. Also a new drug approved for shingles in Japan that is said to help with hsv 1&2 called amenaleaf they were talking about. Something needs to be done to end our suffering when antivirals aren’t working anymore.
  2. Very similar symptoms over here! I’ve had the virus for about 10yrs. First few yrs had typical outbreaks every few months and decided after 2yrs to go on suppressive therapy. That worked for 8yrs than I started getting outbreaks monthly. I switched antivirals and thinks got a LITTLE better, however, almost EVERY month as soon as my period ends and I approach ovulation I get those same symptoms you described. Mostly internal itching and discomfort like a yeast infection, discharge is normal but sometimes sticky almost if that makes sense but not the consistency when you ovulate. The inside of my vagina gets swollen as well. I usually up antivirals and supplements and I’m better in 3-5days typically. Ive gont to the gyno during this time and they tested for yeast infection and bv but they came back negative. They also did NOT see any sores despite the irritation and itching. I have also noticed since this has been going on the past few years my vagina has also not be lubricated like it used to be. Sex has become unpleasant. Ive had to use lube as well as condoms because I’m so worried to infect my husband. Pretty sure I have an allergy to condoms or the spermicide on them as well. If i touch them my hands get hot and itchy same with my vagina after sex which makes me think its an allergy and not herpes related. The lube definitely helps. I also take a womens probiotic thats supposed to help (not sure if it really does) and I may start taking a dhea supplement. Dhea is supposed to help with hormones.
  3. I know I’m late to this thread but I am experiencing the same thing and looking for hope/answers. Have things gotten better for anyone here? I was diagnoses with the virus 10 yrs ago. I did 8 years on suppression with acyclovir and had next to no outbreaks (only time was when I was on the pill and it would happen every 4 months almost like a yeast infection). Then the medicine stopped working for no apparent reason and the outbreaks have been more painful than ever and constant. I switched to valacyclovir which helped for 6 months and now the same thing is happening, every month, sometimes every 2 weeks, always during my ovulation week. I take 2000-4000mg of lysine, multivitamins, elderberry, echinacea, olive leaf, cats claw and prunella vulgaris, eat healthy, exercise. NOTHING HELPS. Ive been taking 2g of valacyclovir a day. Does anyone have a solution?
  4. Has anyone been prescribed Famciclovir for suppression? Any success on it? Valacyclovir and Acyclovir doesn’t seem to be working for me anymore. I was on those for 8years with great success but the past 2 years have been awful...
  5. How much Valtrex are you taking? Are you on generic or name brand? I’m having the same issue and I don’t know what to so anymore!
  6. When I’ve seen my gyno they cannot see sores or lesions despite my discomfort and irritation either. Idk if its because of the amount of antivirals I’m taking that its keeping it right under the skin...
  7. Hi! Please let me know what the infectious disease doctor days. I have been having similar problems for about 2 years now. I’ve had genital HSV for 10 years about, the first year I’d get a typical outbreak every 2-3 months and went on acyclovir after a year, was outbreak free for about 8 years and then all of a sudden, constant outbreaks, horrendous every month, sometimes more! After a year I switched to valacyclovir and was good for about 6 months and then it started happening mildly again and always during my ovulation week. Sometimes I take 2g of valacyclovir which hells but nothing is suppressing this 100% again. I eat well, sleep well and exercise. Ive had this virus for so long I thought it gets better with time. I feel like I am almost always feeling irritated or uncomfortable. I have a physical at the end of the month and I was going to ask for a referral to an infectious disease dr too.
  8. Hey all! I wanted to see if anyone out here is on higher doses of either acyclovir or valacyclovir for suppression as opposed to the standard dosing? It’s been a rough 2 years for me (those of you who have come across my posts know). I feel like lately I am not getting the relief I should unless I am taking 1.5g or 2g of valacyclovir daily. My doctor told me I can take 2g a day during my ovulation week since that is when I seem to have flare ups. I just feel like I’m constantly on the verge of an outbreak. I saw my OBGYN last week and was swabbed for bacteria and yeast but it was negative AND she said she didn’t see any “lesions” but something was DEFINITELY wrong down there. They called in brand name Valtrex for me which is going to cost me $125. I was going to suck it up and try the name brand for a month to see if it makes a difference but I cannot keep up with that copay. Why is this medication so expensive?! It’s so frustrating! Has upping the dose or changing how you take it make a difference for anyone?
  9. I HATE how doctors aren’t taking us seriously. I just had my bacterial and yeast test come back normal. I emailed my provider and asked for the topical acyclovir ointment to see if that will help speed up healing and the response I got was “yes everything was normal, I think the steroids you were on set the outbreak off. Keep on the same regimen and we will talk soon!” Are you fucking kidding me?! I am having issues with this far too much, something is WRONG. Why won’t they call in what I ask. I wish somehow EVERYONE with disease could get together and cause a revolution, bang down the doctors doors. We need to be heard and taken care of. If I had cancer I’m sure they’d try to help.
  10. I’ve read the trials should be done by May 2020 so 🤞🏼🤞🏼
  11. I’v definitely noticed an overall change in my health the passed few years. I het sick a lot more, my asthma is worse, and this virus has spiraled out of control for no reason I can think of. This time in my life I have not been stressed, I eat well, sleep well, exercises, take vitamins, lysine, supplements that are supposed to aid in herpes. I am scared to go off the antivirals because I feel like I would get more outbreaks and want to keep the shedding low and protect my husband as much as possible. At this point I’ve thought of leaving him as well because I never want to be intimate and am so depressed over this. I went just to the doctors because I thought all the antibiotics and 3 day prednisone I was just on started a yeast infection but my tests came back normal, and normal for bacteria. When the nurse examined me she didn't notice any lesions except MAYBE one area above my clitoris looked like one could be emerging, yet my whole vagina had been itchy, red and on fire. I assume its an outbreak from the prednisone and being sick. I was finally able to get a prescription for name brand Valtrex to try. A friend of mine only absorbs name brand medications so I figured I try it. I also asked for the acyclovir ointment to try down there. I’m desperate. I’ve been doing 2g of valacyclovir a day to try and speed up the healing and I do get relief from it when I take it so idk if I have resistance or not. All I know is when I was first diagnosed and got a typical sore every so often it was way less intense than this! I’m at a loss and trying to get an appointment with an infectious disease doctor. It gets to a point where it hurts to walk and wear pants, and all I want to do is sleep. It’s taking a toll on my life as a wife and mother. I have been researching a new drug called previtilir or something like that, it is in stage 2 clinical trials. I pray that it passes through to stage 3 and will be able help us. The suffering with this is immense. I just want a better quality of life!
  12. I am suffering greatly as well. I’m 34 and two years ago this disease has made my life spiral out of control after not having any affect on me for 8 years. Where ate the clinical trials for that drug? I am so desperate at this point.
  13. Are you having just oral outbreaks or genital outbreaks as well? I would give anything to have this on my mouth instead of down below. Valacyclovir worked for me for 8 months and being sick has set me back I think. I get sick a LOT, which makes me think I have an immune problem, but, I’ve always been sick a lot so I don’t know why all of a sudden I can’t fight us. You are around the same age as me, I’m 34 and I started to wonder if I was going through perimenopause even though I’m young for that because I read the herpes virus can become a pain during menopause because of your hormones. I made an appointment today to get swabbed and see if I am resistant to the antivirals. I’m also going to ask for a referral to an infectious disease specialist because I cannot take it anymore.
  14. I agree this is DEFINITELY more than “just a skin condition” and I wish doctors would take it more seriously and really try to find something to help us with this. The reason I think I have something wrong with my immune system is because I am sick constantly, at least every other month I am at the doctors. If I don’t get on antibiotics I end up in the ER because of my asthma that has gotten so severe in the passed several years. I just don’t understand how out of nowhere this started happening. So frustrating. I’ve been trying to find clinical trials somewhere because I’m desperate.
  15. @Fmals When I was diagnosed 10 years ago I was not on suppressive therapy for about 2 years. I would get a “typical” outbreak, a single sore in one spot that would break through the skin and eventually scab over. That happened every several months and was nothing compared to what I’m experiencing now. I was on suppressive therapy for about 8 years until the acyclovir stopped working out of nowhere. I suffered every month for a year horrible outbreaks which at first I thought were chronic yeast infections. I switched to valacyclovir in January and was good up until October when I was ovulating, then I got sick and was on 2 different antibiotics and prednisone (which I only took 3 days and have been on it in the past because of my asthma and did not have a problem). So 3 weeks from my last outbreak I now have a bunch of little sores all over my vagina, I am extremely itchy and irritated, inside looks raw and red. I made an appointment at my doctors for this afternoon and I’m going to ask for a referral to an infectious disease specialist. I just can’t take this anymore.
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